Finally meeting people who understand

A while ago I researched an organisation called The Dyspraxia Foundation, they are a great resource, offering advice, training and opportunities to meet other people with the same condition. They also carry out valuable research and provide support to thousands of parents, professionals, young people and adults affected by Dyspraxia. I knew about the organisiation before but as I’d always denied my condition and felt embarrassed about admitting my Dyspraxia, I have never felt empowered to seek this kind of support- until now. I think part of the reason for being in denial for so long is that I didn’t really understand myself, so having to explain myself to people who possibly haven’t heard of Dyspraxia before would have been an almost impossible task. I also always wanted to do things just as everyone else, I didn’t want to stand out, seem different or draw attention to myself. So I chose to hide, it didn’t always work- if you have special educational needs at school and are statemented, teachers always find ways to make you stand out and feel different- in turn this is very damaging to self esteem, confidence and accepting your difficulties.

Moving on from the challenging times of school, I am here. A few weeks ago I decided that it would be very useful to join the Dyspraxia foundation as a step towards understanding myself. After joining the organisation I looked for adult support groups in my area and realised that there isn’t such local provision. I felt that now was the time that I needed to accept my condition, understand it more and meet people with other similar experiences. Joining the Dyspraxia foundation was great because it is acting as a stepping stone towards all of the above. However not having any local support or people who I could meet up with for a coffee to share experiences and achievements bothered me, so after not much deliberation I took the bold decision to become a local group co-ordinator and set up a support group myself. I am currently in the process of becoming a local group coordinator with the Dyspraxia foundation. I am expecting the role to be exciting but also very very challenging.

However, this will come in the future and will take time to become established as all community groups do. A few weeks ago, I was on the Dyspraxia foundation website and saw that they are holding a conference in Manchester for all those affected by Dyspraxia. At first I jumped at the chance to go, it seemed just what I needed but then after I’d signed up, it became more scary and daunting. I have never openly discussed my Dyspraxia with anyone. Yes, I have mentioned it before but I’ve always avoided going into great details. I have also never met someone else with Dyspraxia before. It was definitely the start of a new chapter in my life.

On Friday I got a very early train down to Manchester, feeling a mixture of excited, anxious and nervous. I arrived at the conference centre just before it was about to start and took my seat. As I looked around the room at the people from different walks of life, all I could think is that these are people who understand. It was a great feeling to know that I was in a room where I wouldn’t be judged or have assumptions made because of my Dyspraxia. I wouldn’t have to feel embarrassed, awkward or ashamed. This was a day away from all of those realities. I sat back in my chair and looked at my programme of speakers and workshops we would have throughout the day. The first speaker was a very interesting and informed Occupational Therapist who specialises in Dyspraxia. She provided an over view of the condition and talked about some of the young people she has worked with. Everything she said made sense, I really related to the stories she told. She used this diagram below to explain how much longer it takes to achieve often the most simplest of tasks, the messages from the brain take longer to travel because the wiring doesn’t have all the connections it needs for coordination so has to go a longer way to get to it’s destination.

The above diagram helps me to explain why I might need more time to do something and to process information. It also explains how people with Dyspraxia work harder than everyone else because they have further to travel and subsequently get tired easily.

The day continued with more informative talks, the next presenter examined the affects on self esteem and social success, by using examples from her own experiences with her two sons who are at opposite ends of the Dyspraxic scale. I related to much of this and somehow had this feeling of understanding that I had never felt before.

The coffee breaks and lunch times where we could informally chat was the most valuable part of the conference for me. At first I felt awkward because I have never told someone that I am Dyspraxic on a first meeting, but here it didn’t seem to matter. I met people who like me had been diagnosed as a child and others who’d only recently been diagnosed as adults. Everyone had a similar but unique story to tell- we’d all coped in very different ways.

I came away from the conference feeling very overwhelmed, but also incredibly empowered. I didn’t feel alone any more. I am determined to get involved in more work of the Dyspraxia Foundation, I’ve also decided that somehow I’m going to go down to London for their AGM in June- the prospect of London causes anxieties and terrifies me because there is so much to think about and negotiate when travelling through London, especially when you have difficulties with coordination and organisation of thought, but I will get there eventually. I have finally found people who share my understanding.

When I came back from Manchester, I was inspired, Inspired to continue this journey of learning and understanding. I think it will take time until I feel that I am completely comfortable to openly bring my Dyspraxia up in conversation, but I am slowly getting there. I came home exhausted, my head was buzzing with loads of information and all I wanted to do was sleep. In the morning I decided to continue my journey of understanding and attend another conference that I had known about for a few weeks but was reluctant to commit to.

Many people with Dyspraxia have other diagnoses to accept and come to terms with. I’m not an exception to this rule, my neurological conditions are complex and quite frankly confusing- I don’t know where one starts and another begins.I haven’t mentioned this before in this blog or to anyone in my life, probably because it’s something I understand least about myself. I have an eye condition called Nystagmus and a very rare form of it. The correct medical definition used to describe my Nystagmus is an internuclear opthalmoplegia or involuntary eye movements. This basically means that my left eye wobbles and they don’t move together, especially when looking to the left. This is the best explanation I can give when I don’t really understand it myself. My eye movements are incredibly rare and unusual- making my Nystagmus even harder to explain.

There is an organisation called Nystagmus network,  I joined this organisation a few weeks ago. Apparently there are people all over the country with the same eye condition, except possibly not mine as I’m so rare. The common form of Nystagmus, is the pendulum Nystagmus- when both eyes constantly wobble from side to side, causing problems focusing and allowing many people to register blind because their vision is so affected. Nevertheless I booked my ticket to Nystagmus network open day on Saturday morning and off I went. The conference was useful and incredibly interesting. There were lots of people there who’s Nystagmus was really debilitating and found that it really impacted on their every day life- many had white sticks and guide dogs. I found sharing experiences really useful and related to much of what people said. My Nystagmus doesn’t affect my visual acuity, however it does affect my ability to judge distances and my field of vision- particularly looking to the left side. This has an impact on my ability to cross roads confidently and knowing when to move if a flying object is coming towards me, for example a football or a pigeon. I take more time to process what I see and sometimes this makes me slow to react or the opposite I jump out of the way too soon because I am just not sure. The day was full of exciting talks and workshops, my understanding of Nystagmus grew and the scale at which it affects people. The most thought provoking part of the day, was discussions with people during coffee breaks and lunch time. There were many ophthalmologists and orthoptists there and they seemed fascinated by me. I didn’t quite realise just how rare and unusual my eye condition is, many had never met someone with my form of Nystagmus before. I was somewhat overwhelmed by the interest that my eyes had caused. I described it as something that I’ve just got on with, I don’t really notice my eyes moving unless people point it out and it has never caused me great concerns or held me back in any way. I came away from the conference thinking that maybe I should talk about my Nystagmus more and understand how it contributes to this massive pot of neurological confusion that makes me who I am.

I am definitely empowered to attend more events ran by both Nystagmus network and the Dyspraxia foundation to add to my understanding and own awareness of my conditions. Meeting people who actually get me has created a very powerful set of emotions. I don’t feel so alone now- it’s great!

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7 Responses to Finally meeting people who understand

  1. Kamini Singh says:

    Thank you for laying bare your soul- my son is a teenager with Dyspraxia- he has never known life without a label- I read your article to him and I think we had a moment- well, I had a moment at least! I have never heard my son articulate how he feels about Dyspraxia- being a teenage male, he doesn’t say much anyways, but I think that your story freed him somewhat. Thank you.

    Liked by 1 person

    • Wow. I am honoured and touched to know that my blogs have had that effect. Its always great to hear peoples thoughts from those that have benefitted from reading them. I too like your son, always had a label attached to me, it can be confusing growing up. As a teenager I too found it very difficult to articulate how I felt about my dyspraxia, its only as I became a young adult I began to find the words. I have always found writing things down a powerful way of expressing myself. Thank you very much for your feedback, and I wish your son all the best. I’m sure in time he’ll find his voice just like I did! Alice

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  2. Kamini Singh says:

    Ps I LOVE the diagram- that speaks volumes to my understanding.

    Liked by 1 person

  3. Kamini Singh says:

    thank you for your words of encouragement. I will pass show my son this as soon as he has finished socialising : which could very ell be next year.
    My son Toby has motor dyspraxia which really affects his handwriting so he has never put pen to paper, literally.
    Can I probe… How do you know your thoughts are not organised? I mean, what does that feel like?
    Please forgive me- all of these years Toby has struggled with various daily things, but other things, he doesn’t seem to struggle at all-
    Also, you said ‘Blogs’ plural- how do I read your other work please?
    Toby doesn’t like public transport, now, I know why
    looks like you gots yourself a new label now- Author

    Liked by 1 person

    • Hello. Apologies for delay in reply, I have been thinking about your question and It has prompted me to write a blog about it. My whole series of blogs can be found at: alittlemoreunderstanding.wordpress.com. You shoud be able to find my most recent post there too. The organisation of thought for me, effects how I process instructions and activities I must do inside my head- I am very rarely aware of this unless people point it out. It also affects me socially and how I respond to conversations, I am very aware of this and it sometimes makes me feel very confused and self conscious. I have a number of coping strategies that I discuss in my latest blog. I can understand that something’s Toby will find easier than others- the best advice I can give you is play to his strengths and make use of the things he really enjoys. Thank you for your comments and questions prompting me to write my latest blog- I hope you find it informative. I find it really useful hearing from other people, and yes I think I like my new label of author!

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